I just wanted to let anyone who has been suffering from chronic cuffitis as I have been for over a year, that I stopped all suppositories over a week ago and I feel 100% better. Some of you may have seen my desperate posts over the last several months as I was being recommended for pouch advancement surgery.
I have been on and off anucort and canasa over the last year, but chronically on one of these for the entire year. I also went through a couple of jars of nifedipine and was using rectiv when really desperate with the anal pain and internal burning.
I honestly believe my cuff was so traumatized from all this stuff I was putting up it day and night that I could not deal with one more suppository so I stopped all. I am not sure if I may still have some inflammation going on in the cuff, but if I do, it is asymptomatic and surprise......no more bleeding either.
I am also emptying my pouch fine and have been able to manage to get through several days at a time with no antibiotics. I may need to add an occasional dose of cipro here and there in between if I am struggling a bit more on a certain day with increased frequency and any cramping.
My GI and I talked about this and he told me to try and see if I can alternate days or go a few days in between antibiotic dosages and I have been doing this on and off for a few months if not longer. I am getting scoped in 2 weeks and will post results.
I just wanted to offer any encouragement to anyone else who has been struggling as long as I have been with these issues. There may be an end in sight. I am afraid to pinch myself as after two LONG and very trying years, I am hoping I may eventually be medication free...even if for only a few months at a time. I will take it.
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